The Importance of Making Memories and Spending Time With My Husband

As we enter the second half of October, I’m not quite sure how the end of the year has arrived so quickly. Time flies while caregiving.

I care for my husband, Aubrey, who has hereditary ATTR amyloidosis. Though he was diagnosed in 2013, his disease onset occurred much earlier. Since then, we have participated in many “memory making” events because we know that Aubrey’s ability to move around will eventually be limited.

His health has now declined to the point that extended trips overseas seem risky, as they require long periods of sitting in the plane. Luckily, we don’t have to worry, since most of the countries we want to visit have COVID-19 restrictions in place that prevent overseas visitors anyway. Instead, we explore local areas and appreciate our time with each other.

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Time is a paradox. On one hand, if we’re looking at an analog clock, each ticking unit is the same day in and day out. We have hours, minutes, and seconds. Each minute carries 60 seconds, and there will always be 24 hours in a day.

Time used to pass so slowly when I was a child. I remember fixing my eyes on the hands of the clock and waiting for lunchtime, the end of the school day, or my dad’s arrival home, which meant we could go cycling.

These days, however, I no longer use the clock to anticipate events. My experiences come in bulk. I appreciate daily routines, preferring to engage in activities that don’t require my full attention, such as walking the dog, cleaning the house, or mowing the lawn. Maybe I am getting more docile in my old age. I make fewer episodic memories these days, and time slips past like fine sand in an hourglass.

Caregiving plays a significant role in these time slips. This is not a complaint, but an explanation of why the days go by more quickly. Nearly 10 years in this role has made it typical and habitual for me. Yes, there are days when I worry about his condition, but even this has become ordinary.

When Aubrey was more mobile and nondisabled, we enjoyed more unique experiences together. We would travel, explore new places, and meet new people. With more special occasions anchoring the days, time felt quantifiable. These days, however, a whole week can pass by, yet it feels like the seven days have been mashed up into one. Is this good or bad? I’m not sure, but I know I’m getting old without even realizing it.

So how do we appreciate time? I believe that with some intentionality, we can stop time — in our heads, at least. I should cultivate space for happy memories. I do not want to wake up one day, find my husband gone, and wonder what I created during my time with him.

Being deliberate about spending time together isn’t easy, though. It’s simpler to escape to our own corners, especially when sickness and caregiving heavily influence the relationship.

Nonetheless, I think we can start with communicating. It’s funny, but these days, Aubrey and I connect the most when we’re discussing politics or issues our country is facing. We talk about it over breakfast and during car rides. We can’t seem to talk about anything else. But I think it’s OK.

Time stands still when we are in the thick of a conversation, and that’s an excellent place to be.

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Note: FAP News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of FAP News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to familial amyloid polyneuropathy.